Life After Leukemia

We signed Isabel up on this study (it talks about brain tumor but they are also including leukemia in this same study):
http://braintumor.stanford.edu/Welcome.html

There were two guest speakers who spoke about late cognitive effects at Camp Okizu. They were both doctors from this study. Isabel was interested to do it and we talked with the doctors about what was expected of her.

I was worried about her being able to handle the MRI. Isabel understood that this is all to help the greater good and not actual cancer treatment but I was still worried about her anxiety which increases near any sort of hospital procedure, no matter how simple or painless (understandably). She assured me she understood it, and I was glad there was a simulated MRI to prepare her for it before hand.

As we hammered out the details of our participation (it was a 4 hour day full of different types of testing), I started to get more intrigued. They do not know why some children have late effects from chemotherapy while others do not. Isabel has almost all of the risk factors, from her age and gender to the type of cancer and treatment she received, yet from what we can tell she has no lasting effects. She's as smart as a whip, reading at a 5th grade level and has zero issues when it comes to school or behavior.

I thought the best part of the study was the actual intervention we can take part in, if we do believe Isabel has late term cognitive effects from the 2.5 years of daily chemotherapy. She would be able to take part in the rehabilitation they've come up with that is shown to improve brain reorganization.

Here is an outline of the study:

Cognitive Effects of Pediatric Cancers

I. Research suggests that children with a history of cancer (e.g. leukemia, brain tumor) are at increased risk for cognitive difficulties
a. memory and learning, executive function, attention, visual-spatial, language
b. can be acute or chronic; some children show ongoing decline
c. can be very subtle or more pronounced

II. Risk does not equal cause: some children have difficulties and some do not
a. risk factors (unchangeable): younger age at diagnosis, increased treatment intensity, female gender, increased time since treatment, cranial radiation, certain genetic variations
b. risk factors (changeable): lower cognitive reserve

III. Why is there a risk for cognitive difficulties?
a. disruption of brain integrity and development by the cancer and/or its treatments
i. chemotherapies, radiation and peripheral inflammation are toxic to the brain
1. immediate effect
2. disruption of brain cells necessary for continued development = delays in certain systems and functions
ii. tumors in the brain compress and displace brain tissue and vasculature

IV. Recovery
a. natural recover: 1-2 years - brain reorganization
i. one of our studies showed possible re-routing of functions to uninjured regions
b. rehabilitation
i. focused instruction and skills practice
ii. studies by OHSU and our group show significant improvements in cognitive skills and brain function
c. increasing cognitive reserve
i. brain exercises, mental stimulation
ii. learning activities, environmental enrichment
iii. physical exercise, proper nutrition

V. Compensation
a. educational planning and accommodations
i. modified curriculum, modified assignments and tests, increased time for assignments and tests, more frequent breaks, one to one assistance, peer assistance, recording classes
ii. individualized tutoring - multisensory learning, metacognitive instruction
b. structured environment
i. external reminders and cues

VI. Treatment Planning
a. school-based testing
b. neuropsychological evaluation
i. Oakland Children's : Dr. Seth Ubogy
ii. UCSF: Dr. Caroline Racine
iii. Standord: HEAL Program or Dr. Shelli Kesler
iv. Children's Heath Council
v. NCNF Directory

VII. How you can help
a. without volunteers, research will not be successful
b. cognitive late effects research impacts not only cognitive outcomes and treatments but also influences cancer treatment protocols and provides important information regarding long term survival and quality of life
c. current studies:
i. Neurobiologic outcomes in pediatric brain tumor (Stanford - Shelli Kesler PhD)
ii. Neurodevelopment in pediatric leukemia (Stanford - Shelli Kesler PhD)
iii. Cognitive outcomes in medulloblastoma (LPCH - Michelle Monje, MD)
iv. Cognitive decline following radiation therapy (UCSF - Igor Barani, MD)
v. Children's Oncology Group: http://www.curesearch.org/

Unfortunately, the MRI experience was horrible.

Isabel was terrified and cried through the whole thing. I didn't realize how much it was like being buried alive! It was very scary for her. I just hope it helps the future generation of leukemia survivors.

We got her cognitive test results back and Isabel is average to above average with everything, so that was nice to read. There were no issues noted and the doctor commented on how bright Isabel is.

Here we are with the practice MRI. Isabel was frightened but went ahead with it anyway. When it was over she confided in me that her fear was worse than actually being inside. I was relieved to hear that and we were confident she could handle the real one. Boy, were we wrong!

After the practice MRI we were able to take a short break and check out Stanford University.

Here we are in the MRI waiting room. We had no idea what we were in for!

The practice MRI was a very watered down version of the real deal. It was big and loud and frightening. The worst part was the computer kept freezing up on the technicians so she was trapped in there way longer than she should have been. It was torturous for her and agony for us to watch her terrified and trapped like that.